What Your GP or Physio Should Tell you if you Have an Accident in New Zealand.


Ward 9As you may have seen from earlier posts, I had a back accident 15 months ago and after 4 visits to hospital, the most recent being of 7 days duration, I am still no nearer to getting the surgery my orthopedic spine specialist / surgeon recommended for me and requested ACC to fund.

What went wrong?

I’m going to tell you about 2 critical things. The first is about how I injured myself, by which I mean the primary cause and the second is about who I got referred to.

  1. The Primary Cause

Blackroom Relay for Life 2016 Print-47My latest accident didn’t seem like much. I was at my 6th Relay For Life in March last year and ready to walk a marathon distance (my goal, which I achieved) over 18 hours.

Setting up prior to the event and prior to heading for the survivors’ tent (I am in remission from prostate cancer), we had a 4 room tent to set up, and the poles and pegs were in a big bag in the trailer that was provided by the organisers to get our gear from the car park to our team site.

It was super heavy. No one seemed to want to get it out, including the guy driving the tractor. So I tried. Unfortunately, my back couldn’t take it and I ended up with a back strain injury that still has me off work today, 15 months later.

FC9I managed to do the distance through the use of medications like Panadeine and I had booked a couple of days annual leave after the event to recover, based on previous years experience. I also had a float and massage the following day, so I didn’t feel too bad after that. A bit sore, but otherwise OK.

A few weeks later, on ANZAC Day, in fact; I remember because it occured on the weekend before the public holiday (a Wednesday) and my wife and I had taken the Thursday and Friday off to go away in the Corvette for a few days holiday.

It had been raining, and on the Sunday before our planned holiday, I mowed the lawn and using the catcher to collect the heavy wet grass. I had to twist on an awkward angle to detach the catcher from the mower, twisted my back again, and the rest as they say was history.

You can read previous blogs but the key point was that whilst an MRI showed damage, ACC weren’t satisfied with the injury having been caused by the incident, they said it was age based degenerative disc disease. They said they would try to see if a previous injury could be relevant that they could tie it to which would convince them to cover the cost of the surgery and herein lies the problem.

A Skydiving Accident

IMG_0974Many years ago I had a skydiving accident. It was a tandem jump and if you have ever experienced one, you know that the customer is at the bottom and the Jumpmaster is on top. When she tried to flare at about 30 feet we got into an air pocket and instead of opening up, the parachute closed down. Instead of gliding to a running stop, we dropped and I took her weight on top of my own, on my tailbone.

It hurt like mad, but I was also flying high on adrenaline from the jump, so I didn’t really feel the pain that much. That night it was very sore, but we went to a big neighbourhood party and I found that bourbon acted as a great pain killer, so I managed pretty well and enjoyed the festivities as long as I didn’t make any sudden moves.

That night there was a bit of a storm and one of our trees was blown over.

The following morning, I was trying to clear branches in our yard, bent down and found I couldn’t straighten up again.

I went to physio who asked what happened and I told my story, the ACC record said “bent down and hurt back while picking up branches in garden”. I had 26 physio visits, was referred to Pilates and was assigned a personal trainer.

I did talk to them all about the sky diving, but it never made it to the ACC records. It therefore registered as a strain.

Another Accident

I was racing my land yacht in a 180 km enduro on 90 mile beach. I crashed at the northern end of the beach, picked myself up and raced back again and had to endure racing through snapper holes around Ahipara Beach, which is like racing on sheets of corrugated iron. Lots of pain, but again lots of adrenaline. For much of the race, I was going at speeds of up to 100 kph on a thin cushion as you can see on the video above, and with my feet sitting on a steering rod so all of my weight was on the lumbar area of my back.

At the end of the weekend it was a 5 hour drive back home to Auckland and a couple of days later, guess what? I was in the garden again, bending over and suffered intense back pain.

Guess what went on my ACC record?

Lots of physio for an injury sustained doing gardening.

So, when the specialist looking for reasons to not approve surgery (me having had every other treatment they could think of, for over seven months), they looked at what I had been referred for (back strain), looked at old injuries sustained in the garden, so probably not significant, all because I didn’t understand the importance of mentioning the crash or the sky diving on the initial ACC form. After all I was getting treatment. That was all I was concerned with at the time.

So What?

I might have got a very different response to my request for surgery if the primary causes of injuries had been clearly recorded, instead of lost to obscurity. Now I am chasing a Review of ACC’s decision not to fund the surgery which is going to be time consuming and expensive.

So if you are injured and covered by ACC, make sure that, irrespective of which straw broke the patient’s back, that the primary cause of injury is documented, even if you are happy that the treatment will fix the problem.

I’m now in a situation after many back injuries, that ACC are claiming age based disc degeneration disease and I am going to have to prove that I did in fact sustain some major injuries and that it was the cumulative impact of those injuries that has me now needing expensive surgery.

If I had made sure they had all the information correctly recorded, it would probably have been plain sailing for me now, instead of 15 months off work, the possibility of losing my job, and a long, expensive and stressful battle to get my back repaired so I can get back to work.

2. If Referred to a Specialist, Make Sure it is one who Operates in Your Local Public Hospital.

I was referred to a very good surgeon by my GP, largely because he is one of the category of trying everything else before getting the scalpel out and doing major surgery, which in my case will involve 2 surgeons for 4-5 hours and a 5-day stay in hospital.

Because of all the drama with ACC (New Zealand’s Accident Compensation Commission), in April I asked my GP (at the recommendation of my surgeon) to refer me to the public hospital. Whilst I have other medical insurance, it only pays (up to) 80% of the costs, which means I would personally be up for around $18,000 that I have to find myself. It could even be more because they won’t know exactly what they have to do until they cut me open.

So I was referred as ‘URGENT’ to North Shore Hospital on the 4th of April this year. I told them I was not working and that I could come at short notice and asked if they would put me on the cancellation list and they said “Yes, we have a cancellation list, is there anything else?”

I rang a few times, mostly talked to voicemail and the first time I spoke to someone they said “It’s only been a month!” To which I responded, “yes but I was referred as urgent.”

This month I had a flare up and spent 7 days in the Orthopedic Ward at North Shore Hospital. They did an MRI, hooked me up with a pain team and eventually once the pain was under control with drugs, they let me go home.

They told me that the stay would not be seen as my First Specialist Assessment (FSA) for which there is an expectation that you will be seen within 4 months of referral. They said that the Orthopedics Team knew about me and I would probably now be seen within 2 weeks. So they scripted 2 weeks of pain medication for me. They said I would get a confirmation letter from the hospital.

So I got out of hospital on the Sunday, waited until Wednesday and rang to find out when my appointment would be. I had to leave a message on their voicemail. I rang again on Friday and again left voicemail.

On Monday this week I got a phone call telling me that they did in fact have a date for me in late August. Today is the 17th of July.

So much for my 2 weeks of pain medication. I should have got the message when the doctor who checked me out of hospital laughed when I said I was expecting to be seen in 2 weeks.

So what?

If my GP had originally referred me to a specialist who also worked on the public health at North Shore Hospital, there is every likelihood that I would have been referred for surgery at the hospital in November last year, and could well have been back at work by the beginning of this year.

Now instead, I am still waiting for a First Assessment, and they will want to decide for themselves what treatment I should have. So while the logic behind my original referral was sound, the end result is that it set me back anything up to a year.

Hindsight is a wonderful thing, but the point I am making is that you, dear reader, may have a back injury like me, or perhaps a knee or shoulder injury from playing sport.

By learning from my experience, you might be able to have a better experience, receiving treatment within the same year of your injury and not jeopardising your employment and having double the stress. 

SUMMARY

Being in severe chronic pain for over a year is horrific. The potential consequences can be many including

  • losing your job,
  • becoming addicted to pain medications,
  • sleep deprivation with all that comes with that,
  • becoming stressed to the point of depression,
  • having no social life or family life,
  • which also results in relationship stress.

Here are two ways you can reduce the risk of experiencing what I’m going through.

  1. If you injure yourself doing something major and then aggravate it with a lesser injury. Insist that the cause on the ACC form is the major impact and the secondary injury is clearly shown as secondary. It might not matter now, but in 10 or 20 years it could save you from the horrible 15 months I’ve endured so far.
  2. If you need to be referred to a surgeon, even if you have medical insurance, get referred to one who operates from your local public hospital. You may not end up needing to go public, but at least you have viable options and it could save you many months in getting treated.
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A Few Hours of Bliss at Float Culture


I arrived in an addled state this morning at 11AM for my 10AM appointment for a float and massage at Float Culture. It was in my diary for 10AM, but somehow that’s when I had booked my taxi to pick me up. I only got a few hours sleep last night, that’s my excuse and I’m sticking to it.

When I got there, they told me they had cancelled my appointment because I hadn’t turned up, even though I had confirmed this morning. I just tapped the button, not even reading it, or I would have realised and called for an earlier cab. How often do you do that with EFTPOS or paywave, just hit accept without looking at the price?

FC9Anyway, after my heart dropped, it turned out I was in luck and despite messing everyone around, they were able to fit me in. They asked if a Pod was OK rather than one of the newer ‘rooms’. When I’m floating on Epsom Salts laden water in the quiet and dark it could be a farm water trough for all I care.

I keep a pain diary so that I can discuss my physio treatment, exercises etc for my back injury with the team of people assigned to restoring my health and getting me back to work. (3 bulging disks pushing against nerves which has kept me off work for 6 months) The injury has me at a pain level of 6-7/10 most of the time and that’s with some hard hitting pain medications. This morning I was up at 2AM (6/10) 3-4AM (7/10) and up again at 6AM with 6/10.

Once I was in the pod, for some reason I struggled to keep my mind quiet and even using breathing techniques, my brain would be off on some tangent before I could count 5 breathes in and out and the hour was over all too soon, BUT I could barely feel my back when I got out of the tank for a shower and I still had a massage to come.

Now I’m no biochemist and my understanding was that endorphins are what used to give me the bright colours and the grin that wouldn’t stop, back before I had radiation therapy, and enkephalins are the body’s natural painkillers, but it seems they both come from the same part part of your brain. I didn’t have the buzz, but I also didn’t have the pain!

Anyway I went straight from the tank to the massage room for an hour of total relaxation.

At the end Kim said to take as long as I needed. I could have quite happily gone to sleep at that point. Well when I did get up from there, I was pain free, I was able to stand up and with a bright red rosy face, I felt the way you probably take for granted. I was able to put my track pants and shoes on without grunting and groaning. I was even able to stand up, leaning on a counter to look out the window watching for the cab to arrive without any pain.

Now to be fair, after the taxi ride home I was up to 3/10 and now I’m now at 4/10 but that’s still a lot less than 6-7. It will go back to 6-7, but I can’t describe how good it felt to be pain free without the use of drugs. No other treatment other than morphine has been able to do that for me in the last 6 months.

If you have any sort of chronic pain injury, I strongly recommend not just having the float, but combining the two. If you think how relaxed you feel after a massage, imagine having the massage when you are already totally relaxed. I pay a membership subscription and occasionally I get given a voucher for someone to get a free float (does not include a massage).

If you live in Auckland, leave a comment and I’ll use some random method to let someone try it for FREE. Find out more about floating on their website. I’ll pick one person on 1 December. Think of it as an early Christmas present. That’s worth $100, but I’m sure you’ll agree the outcome is worth much more. Do remember it is sensory deprivation so if you get claustrophobic, this is not for you.

Meanwhile if you’re still here, I’m going to get into the Delorean and zip back to 4 October 1987 for my 3rd float. You can go back to my previous blog for the 2nd one.

Now just to set the scene, I was working for a company that was bleeding money for no obvious reason (yet). I was making sales for 6 figure sums of money, delivering cheques in some instances, but somehow even though they had been cashed, they never seemed to reach the company bank account. It got worse from there when not long later I arrived at work on my way to a sailing weekend on the family yacht, to find out why my pay hadn’t been deposited. I met the receivers who were in the processing of padlocking the office door. To make matters worse, a certain person (not me) had taken a first class family world trip on my company credit card (note, if you get one of those, you are jointly and severally liable for any debt) and the bank took me for the money. I ended up losing just under $40,000 and I was just an employee and had to refinance our home. Take it that I was a little stressed.

So, off to the Belleview Clinic in Mt Eden on 4 October. This is what I wrote:

“My third float. Nothing spectacular. I didn’t feel any more relaxed, or different. The float itself was unremarkable, anticlimactic. Yet as I sat down to relax afterward, I felt a vibration throughout my body and a general sense of well-being. Not euphoric, but content.

I concentrated some energy on relaxing my jaw, probably the last place where I still felt stress from clenching my teeth.

Driving home I felt rag-doll relaxed, although I still felt fragile in the face of pressure, real or imagined. (Note at this stage I wasn’t aware the company I worked for was being embezzled, I just knew something was seriously amiss), It is difficult going from a cocoon to a demanding environment. I felt like I didn’t want to let go of the comfort of zero responsibility that I enjoyed in the tank.

Floating Book

The current edition available from Amazon

My general bearing and outlook was positive and I could see many parallels to other relaxation methods like meditation. I felt as though I was taking a short cut. It was interesting that subsequently I read similar comments in ‘The Book of Floating‘. It has been compared to many ‘laboristic’ relaxation methods including Yoga and acupuncture. 

There is a notebook of floater’s comments, a visitors book in the lounge at the clinic. Every comment is positive. Most people are there to solve personal problems and seem to want to apply mystical meaning to the amazing results. That’s not surprising off course when their bloodstreams are getting a rush of natural brain produced opiates.

I found myself holding back from conclusions, but was keenly looking forward to moving beyond release of tension and balancing myself, to getting creative with the tank and finding new ways to benefit from sensory deprivation. 

I subsequently did that and had all sorts of experiences and experiments that you can read about in future blogs about these awesome tanks. Bookmark or subscribe to this blog to find out more. If it’s boring you to tears, sorry, this is my personal soapbox and like the woman who was offended by the 2 minute song, based on the doppler effect, that I performed in one of my sets at the Parnell Rose Festival many years ago, called What I Like About Reefton. She stood up and said ‘That’s not very nice” and left her seat in the audience. If you want other types of blogs feel free to visit one of my other blogs like The Future Diaries , Location Is Everywhere , First Home Buyers Training or SoLoMo Consulting.

 

Sensory Deprivation Float Experience in 1987


FC9This was my second ever float and I want to warn you that unless you really want to know more about the floating experience, my personal one, click on one of the word cloud buttons in my blog and find something that is more relevant to your interests.

When I first started floating back in 1987 it was something quite new. I was sales and marketing manager for a company that was very successful, but being embezzled by its CEO which was apparently a recidist pattern for him, but one I didn’t find out about until after it had cost me and some of my colleagues a lot of money and stress. I won’t mention the company, some of you will know the story. It’s really just to say that I was working really hard, bringing in some amazing 6 figure sales, and stressed, partly because at the time I knew something wasn’t koshur but I didn’t know what. I do wish some of the people who knew the past history of this criminal had warned me, because I would never have accepted the job and would probably have followed the career path opportunity to Santa Clara that stood before me.

So I go from there to the following experience, which is pretty long and unexpurgated. It’s basically my journal and pretty geeky. So here goes:

“I don’t know at this stage if there is any relevance or not, but shortly after my first float I felt a sensation in the region of the right-front part of my brain. I have felt it several times since, almost as if another sense is trying to find its way out. It has no other manifestation other than a slightly happy feeling accompanying it, which may be psychosomatic. It feels related to and yet isolated from the optical nerves.

Today, (Sunday) I had my second float, one and a half weeks after my first. I did not feel as stressed, although I did feel a need for an aid to relax. I was also keen to follow through on the principles of floating which I had started reading about. There was a force driving me to write down my experiences. A sense that something good was going to eventuate from this, far more than just relaxation.

The last week has been very tiring. Thursday was marred by arguments with the CEO and other stress-inducing problems. In the afternoon I left Auckland and drove to Palmerston North (About 350 miles). The Sales Engineer and I finished setting up a demo at the hotel we were staying in at 11:30PM.

The demonstration did not finish until after 4PM the following day, which was followed by further arguments with the CEO. It basically came down to, I was bringing in cheques from clients for 6 figure sums of money. They were being deposited somewhere and I was being told the clients hadn’t paid and to chase them for the money I had already handed in. I had never experienced a con artist like this and this being one of my greatest values, I really didn’t know how to handle it.

By 8:30PM, I was exhausted, driving back home I was starting to drift to the wrong side of the road. I decided to stay overnight in Taupo. I can’t remember the last time I felt so exhausted and overemotional. I write this because it relates to my mental state when I had my second float.

So back to the float. I was much more relaxed physically and settled in very quickly.

I did not experience the same heaviness in my neck and shoulder muscles, which suggests that much of the physical effect from the first float was a release of long term muscular tension”

Note, I am pretty much copying what I wrote verbatim at the time. It’s raw and was only really written as a personal journal. It’s quite interesting reading this 32 years later. I also want to note that I was not under the influence of any drugs of any kind.

“The muscles that felt tired and were unravelling this time were those I had just used for 1,200km of driving; arm and leg muscles.

-Mental / physical disorientation. The first example was a feeling as if I had my legs crossed at the ankles. Although they weren’t crossed (I checked), my senses were convinced that they were.

An ex-client once lost a hand in a chainsaw accident. For months afterward he felt pain in the fingers of a hand that no longer existed. (AKA Phantom Limbs)

I had a similar manifestation on several occasions that I was clenching my fists. Again I knew that my hands were open and relaxed (in the yoga nidra position, palms up). It was not just a feeling that my fists were clenched, my sense of touch had no doubt at all. However, I raised my hands, they were as I knew, open and relaxed.

I passed into and through the REM state much more quickly than in the first occasion. I find the REM state enjoyable and relaxing even if my eyes seem to be going to town.

I finally reached a point where my mind and senses were totally blank. This must be very similar to the point people seek with meditation. It was a sense of being nothing, or an infinitesimal body in a black void and being totally relaxed and comfortable with it.

I believe that this period lasted for only a fraction of a second, although it appeared to be a long time. As soon as I realised I was in this state, I snapped back to reality.

I have noticed a tendency, which makes me feel a little cautious, possibly stopping me from achieving total relaxation, in that my respiration rate is reduced to a mere fraction of normal, and there are in fact periods where I do not breathe at all, at least in comparison to my normal conscious state. The breaths are so far apart that when they come, they distract me.

I also noticed that after the first float, for 1 or 2 days, my time sense seemed altered. For example the time period between light changes at traffic signals seemed much longer, although intellectually I knew this was not so. (Weed smokers will probably relate to this, but I promise, I was totally straight).

Other than that there is little to remark upon. The second float was understandably a little anticlimactic and the endorphin level much lower than it was previously. I was advised by the manager to expect changes over the next few days.

Meanwhile, my driving muscles are feeling sore and I do not feel the same sense of euphoric confidence as I did the first time.”

I think like most experiences, the first is often the most moving. Reading back through this, it is probably very boring, but being a geek, I was trying to analyse the experience, as well as enjoy it. There were in fact physiological and psychological ongoing benefits from this which I will write about in my next blog.

As I have said previously, these blogs are personal and I share them in case they are of interest to someone and to remind me of previous times. If you haven’t floated before, or you want to get more out of your experience, I also recommend keeping a journal.

If it sparks your interest, go and visit Float Culture and tell them that my blog vaught your interest and Luigi sent you. If you are not in Auckland, just Google float tank and I’m sure you will find one reasonably close by. Anton, the owner of Float Culture told me that there are now 19 places in New Zealand where you can ‘float’. I’m sure that is a record and shows that there is real benefit from this experience.

 

 

 

My Latest Float at Float Culture and my Second Ever Float in 1987


Float 5So yesterday I had another float and massage at Float Culture. My back pain from my injury back in April is still hovering around 6-7/10 most of the time and I was so looking forward to the zero gravity and a great massage from Kim.

I had booked the Cosmic Room, which is a newer float tank, which instead of being a pod like the one I showed a photo of in my last blog, which was also cool, this one is more like an Alice in Wonderland meets Dr Who.

What is really cool about it is that while it is still a floating tank, you enter through a door and it is high enough to stand in, which is great when your time is up and you want to stretch out. I can’t say one is better than the other, when you are in the dark in total silence, floating on a silky nothing, it is really irrelevant. It’s also easier if you have a physical injury in regards to getting in and out.

Float 2When you come out after your float, the atmosphere is pretty cool. Bright colours and a picture of a galaxy awaits your heightened senses, especially if your body produces endorphins, which mine isn’t good at since my cancer treatment, along with low cortisol and virtually no adrenaline, I don’t experience the mental natural high that you will, but there are so many benefits from floating that it’s no longer an issue for me. A lot of cancer patients float. Relaxing when life is tough isn’t easy, but here you have no choice.

I think I’ll turn this into two blogs because the next one is going to be quite long and possibly boring unless you really want to know more about the floating experience in detail. Being a geek, I did.

When you have been in chronic pain for 6 months and any time you are awake, gravity wants to push your vertebrae together and you are constantly dopy from pain medications, being in an environment like this is bliss. I was pain free for most of the day yesterday and what you might take for granted (just feeling physically normal) was wonderful for me.

I met, Anton the owner of Float Culture and we had a great chat with him and one of his team about how there is a resurgence of interest in floating and sensory deprivation, some of the history of the origin of sensory deprivation tanks. More of that perhaps in another blog, but for now I just want to say:

  1. Whether you are physically or emotionally stressed, injured, tired or just want to try something new, I strongly recommend going for a float at Float Culture in Grafton.
  2. If you are totally relaxed, life is great, and you just want to try something new, refer to 1. You don’t have to be suffering in any way to get a benefit from it. The experience will still be amazing.
  3. Go with a friend, they have several floating rooms. But you might need to book a few days ahead. They have an app and you can also pay a subscription and get better pricing if you go regularly and even free passes for friends. One or two lucky people who talk to me nicely, might be able to get one of those.
  4. Have a float followed by a massage. Imagine having a great massage when you are already totally relaxed. If you’re thinking about a day spa and want to try something new. Do this.
  5. Tell them Luigi sent you. I want them to know that I am recommending them because I want them to do well. There have been some years where there hasn’t been a float centre in Auckland, which was frustrating.
  6. 6. Just do it. Make a booking today. If you’re not totally convinced, read some of these testimonials from other floaters.

Life List #2 Record an EP and Video of my Songs about my Cancer Journey


I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.

Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.

IMG_2082

Where we leave our clothes when we go in for radiation treatment

I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.

 

So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.

It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.

Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.

One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.

So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.

I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.

I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.

Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.

So will you help? I need people and I need advice. You can contact me via Twitter Facebook by joining the group Musicians with Cancer and other Maladies, LinkedIn or Email.

 

A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

Day One External Beam Radiation for Prostate Cancer


I was all geared up to start on Monday 7 December, but it turned out that they had several people starting with both chemo and radiation, whereas I’m just doing radiation, so they changed it to Thursday 3rd December. Minor problem, I was going to be in Christchurch so we met in the middle and yesterday morning I was up at 05:30 and on my way to Mercy Hospital joining the early morning peak traffic hydrating from a bottle of water I had to finish by the time I was about half way there.

When you have radiation treatment you have to have exactly the right amount of fluid in your bladder and your bowel needs to be empty. The water helps push your organs out of the way and stops them getting hit by the radiation beams. If you don’t have that right, they’ll take you off the table to drink more or have a bowel movement (one way or another) and then you have to wait while someone else goes ahead of you as they are treating around 100 cancer patients a day!

They told me this happens to everyone around 6 times during their treatment and I didn’t want that being me. This involves changing your diet, for me it means drinking a lot more water than normal (apparently I’m in good company, in that most men live their lives in a state of dehydration) and avoiding any foods that can create wind, because gas also impacts on the shape of your bowel. If anyone wants details, I can share them but the list makes it very difficult to eat at restaurants as I found in Christchurch.

So it was with a sense of trepidation that a. I would arrive at Mercy Hospital in the right bodily state and b. that I would arrive there on time.

Once I got there I was sent downstairs where I was issued with my lava lava in a nice yellow tulip colored bag, got changed and escorted to the control panel outside the radiation room and then into the room where it all happens.

Mercy ScannerThe 2 machines on the side make up the CT scanner. When I was prepped I had an MRI and a CT scan to measure the size, shape and volume of my prostate. The CT scanner in  this room is there to make sure that you are lying in exactly the same position as you were when they took the first image. That way they don’t kill healthy parts of your body. The part at the top is where the radiation beams from.

You lie on the table with your head on a little support and your knees on the blue half pipes. They prod you into place so that you line up as above and then leave the room. Like most scanning systems they have microphones and speakers so they can stay in touch with you while you are in the room.

Once they get started the CT scanner and the radiation head rotate around your body in one 360 degree circle. It felt like something out of a science fiction movie and just as I was settling in, thinking “this is interesting” it was all over, they came in and told me I was done and I could go. The whole treatment itself took about 1 1/2 minutes.

I got dressed, went to my car and drove to work for a $4 Subway breakfast sub and a coffee that I had been hanging out for (not from Subway).

Then something hit me like being knocked in the head by an out of control snowboarder in a white out. I felt overwhelmed for a couple of hours. I think it was all the underlying stress that I had been ignoring and the release that the first bout of radiation was completed, I had drunk enough, followed the diet strictly, hadn’t embarrassed myself by having to get  up off the table, all the time reading books and Doctor Google and thinking about side effects, planning for succession at work if I needed to call in sick, all the things I’m trying to get done at work before the Christmas break, a friend who had just passed away during the week, reassuring my family and more. I was in a funk.

I worked my way out of that and had a good day in the office (my colleagues have been awesome), went home and once again felt exhausted. I ended up crashing on the bed for a couple of hours after comfort eating some nuts and my mandatory Kiwi Crush (a pleasant part of my treatment diet).

Now a day later and I’m still feeling a bit tired, but much better knowing I am on my way to dealing with this cancer. I’m getting focused on the future. Things like adding to my bucket list (number one is of course beating the cancer) and looking forward to Relay for Life. My kids have started Team Early Birds. More on that later.